"This is our normal," is a phrase all special needs parents can relate to. Guest blogger Ellen Elizabeth explains her EA/TEF journey.

“This is our normal,” Ellen Elizabeth says during the telling of her family’s EA/TEF story. What you are about to read can bring hope to families living through not only EA/TEF surgery and treatment, but also struggling with infertility and addiction.

I knew it wasn’t going to be an easy ride before my twins were even conceived. An infertility diagnosis sent me spiraling down a dark, lonely path that only I could get myself out of. Not only was I infertile, but I was struggling with alcoholism. The vicious cycle of addiction reared its ugly head most ferociously after my diagnosis of infertility. I no longer drank for fun; I drank to get obliterated every single day. I lost myself completely while blaming myself for all of the issues my husband and I were having becoming pregnant. It got to the point where I knew I would not be able to become a mother if I was not sober.

That was 6 years ago, and my twins are now 4. They have never seen me drunk or hungover. I would never have been able to have them if I had not gotten sober. Little did I know, getting sober was only the beginning.

We didn’t find out the sexes of the babies before they were born. I wanted it to be a surprise—never again will I experience a surprise like that. Baby A was born first. It was a boy! I was elated and crying as they put his tiny body into my arms. He was only 5 pounds and 2 ounces. His tiny little scream sounded different than I expected. I immediately fell into the deepest love I have ever felt in my whole life.

I had to give Baby Boy up so they could take him to the corner to get cleaned up and do all the things they need to do right away. Baby B, who was a healthy girl, wasn’t far behind. I immediately had to start pushing. As I was pushing Baby B, a nurse came over to me.

“Something is wrong with your son. He has to go to the NICU. We aren’t sure what is wrong right now, but we can’t get the tube down his throat to suck out the mucus.”

I was still in shock about what all was going on. “OK,” I stuttered. “Do whatever you need to do.” I wouldn’t see my son again for another 6 hours.

I found out from the doctors that Baby Boy had something called TEF and EA. I had no idea what either of these things were at the time. He proceeded to have TEF surgery on Day 1 of life. He was in the NICU for 17 days while his twin was home with us. Going between the two of them was a challenge, but we did it. Everything we went through was unexpected, yet we figured out how to navigate it.

Within the first 6 months of his life, we had to perform lifesaving CPR four times, call 911 twice to receive emergency care (it took them 4 minutes to get to our house—quite literally the longest 4 minutes of our lives). They inserted an NJ feeding tube, performed a tracheopexy, and surgically inserted a GJ feeding tube.

I was able to go through these terrifying events without drinking. Not drinking is my new normal. My son having TEF/EA is my normal. This is our new normal. Now, looking at him, you would have no idea. He just has a loud, barky cough that startles people. His tracheomalacia is severe enough that he still requires thickened liquids, inhalers, and a cough assist vest. He will always be prone to pneumonia and other bronchial illnesses. But he is our perfect little boy. His normal is not another normal. It is only ours. He picked us as his parents for a reason. We picked him as our son for a reason. I will forever be learning from him. And most importantly, I will forever love him for him. More than anything else, this is our new normal.

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Photo by Greg Rosenke on Unsplash

By Ellen Elizabeth

Ellen Elizabeth is an infertility warrior and recovery advocate who uses her skills as an author and sober mother of twins to coach women struggling with feelings of shame and inadequacy. These women feel powerless to quit drinking or unable to bring a child into the world. Through radical honesty and recovery principles, Ellen inspires moms and their partners in all forms to define who they want to be and transform their demons into dreams. You can connect with her at her website itsellenelizabeth.com.


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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.



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